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Old Mon Sep 24, 2018, 01:03 PM
Owen M Owen M is offline
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Join Date: Apr 2017
Location: High River, Alberta, Canada
Posts: 8
Thanks for your posts Neil. I want to cover 2 points. I will be 80 in one month and was diagnosed with MDS (Trilineage) in October 2012. Was on watch and wait until 2015 and during that time did not really notice much of a change in what I did and how I was doing it. Played golf 5 days and week and went to the gym 3 days a week and curled 3 days a week in the winter. In 2015 I began to notice that I was starting to tire faster than normally as well as sweat when this happened. Monthly CBC showed that my Hgl had fallen and my Oncologist placed me on Epotin-Alfa (Eprex)( still on it) My Hgl came back to where it had been (still a fair bit below normal) and while my stamina has improved it is not where it once was. I continued to golf 3 days a week, riding in a golf cart , still went to the gym, but reduced my routine and stopped curling because I could not sweep like I used to. Instead went to the indoor track in a local field house and my wife and myself walk 3 Kms 3 times a week. In 2017 my WBC took a dive and my Oncologist said it was time for me to start Vidaza. Have never had a trnasfusion. I just completed my19th cycle and am lucky enough to have a brand new regional chemo centre at our local hospital. The nurses generously say that I am a poster boy for Vidaza as it has steadily held me around the CBC levels that I was originally diagnosed at. My Oncologist took part in the Trials when Vidaza was being developed and is adamant that it be given by injection because he says the results were much better than through port. At the end of my seven days of injections I have a number of sore lumps in the stomach area that are tolerable but fairly sore. This lasts for about a week. I also have chronic mild diarrhea , but these are the only 2 side effects. I have stopped golfing because of sore stomach and also got quite tired around the 15 hole. Have increased my walking program. I continue to do most of the regular things I did but at a slower speed and when I forget the body quickly informs me and I sit down and rest. Nova H. based on my experience and also one close friend who has just completed 32 cycles on Vidaza; encourage your grandparent to at least attempt to continue doing the day to day things that they have been doing, but to listen to their body and slow down when necessary. On a positive note my wife says even some positive things can come out of having to slow down. I now start off putting things together by reading the manuals rather than waiting till I get in trouble and having to start all over again.
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